Monday, June 24, 2013

Our summer started off well enough--Elena was ready for the last day of school!

After bus surprise!

Two days later she developed a cough. The same day, she had a well visit at her pediatrician. Overall her development is going well, she's on her regular growth curve. We've worked hard at getting Elena to gain weight (seen many nutritionists) and stay strong (lots of therapy and exercise). She is nicely on the 3rd percentile for age (8), height (44 inches), and weight (42 pounds) and a BMI score of 16.

Then she got sick.

Sick with some random virus, nothing too crazy--I know because I got it, and so did Vivian. Started with a cough and fever. Every time Elena gets a fever, we worry about slight dehydration--which inevitably leads to constipation. We give her lots of fluids (adding extra Miralax) and were ready to wait it out.

She started vomiting. I thought it might just be a stomach bug, as she felt a little better the next day. The next night, she started vomiting again. This has happened before. The last time this happened, again, it was after a short illness, and the nighttime vomiting continued for over a week (with some watery stool). Her pediatrician pieced together the puzzle-her bowel was mostly obstructed (only allowing liquid to pass). During the day, her general movement allowed some bowel movement, but when she went to bed for the night, her food and drink had no where to go--so she would get sick.

This time, we just couldn't get any liquid in her--she threw up everything, including sips of clear liquids. She did not have a fever. After close to 24 hours of this, I took her to the ER. I didn't think she was super sick--I figured it was a bowel obstruction, like before--but I assumed that someone in the ER could help her (if nothing else, administer IV fluids). They weighed her when we got in--she was 37 lbs.

Elena was given anti-nausea medication. It helped her not feel sick to her stomach--but didn't stop the vomiting (anything taken by mouth just didn't have anywhere to go!). IV fluids did perk her up a bit, and she was finally able to pass urine. She had a chest x-ray (b/c of her cough), which was clear. Her abdominal x-ray was very informative.

Elena's colon was impacted--with no visible air pockets--from the rectum to the splenic flexure. My guess is this is significant, but not serious.

Special Visitor: Dusty the Therapy Dog

Another special visitor

Since we couldn't get her to keep any laxative liquids down, she got enemas every two hours to try to remove the blockage. Two were administered at the hospital; they had no effect. Her doc and I agreed that we could do this at home--she'd probably be more comfortable, and possibly start to move around which could help her situation. I requested an IV bolus, and we headed home with her nausea meds and the plan to take steady liquids by mouth (with a laxative mixed in) and enemas every 2 hours until they were productive, as long as she was awake (sleeping took precedent over any of this).

Eight enemas later, they started being minimally productive. By this time, Elena could drink small amounts without the danger of vomiting. She could eat a little. She was moving surprisingly well, given her inactivity for the past week--being fatigued/immobile is horrible for a spastic cp kid, as inactivity makes tightness worse. I gave her lots of leg massages and we tried to play games in different sitting/laying positions.

After enema #12, she was out of patience. (Poor E!) She woke up the next morning and was able to pass very soft (hardly solid) stool, unprompted. Her doctor said to continue administering one enema/day (and continue her laxative) until large stools are passed (presumably responsible for the blockage). This is where we are today.

Obviously, I don't want to repeat this.

Elena eats a balanced diet. She loves veggies and fruits. She takes a daily dose of Miralax (and I'm not interested in conspiracy theories on if you think this stuff is bad--her life is worse without it, period). She has been on the same dosage of Miralax (2 tsp in the morning) since she was 8 months old.

My thoughts are 1) have her switch water/juice for milk (most of the time--that girl loves milk), 2) make sure she eats yogurt several times a week (top it with chia seeds or something like that, and introduce probiotic supplements?), and 3) give 2 teaspoons Miralax morning AND night. A friend also mentioned some sort of gut massage--where you gently massage (in a specific manner) to help move things along the colon.

Do you have ideas of what we can introduce to her diet? (I'm looking for proactive ideas here.) THANKS!

Tuesday, June 11, 2013

There is a lot I'd like to do with the videos below (correct for picture angle, shadows, etc.) but in the spirit of getting this posted promptly, here is the raw cut of the night bracing progression.

My original goal was to coax Elena into wearing her night splints through the night for a period of four months, taking a picture each morning (ideally in the same outfit). We started on the 19th of February, after our Disney trip. The official end is tomorrow, June 12th.

Elena has tried very hard to wear her splints (one on each leg) as much as possible every night. The total wear time (assuming tonight's wear time is average) has been approximately 412 hours over 16 weeks (112 days, so average of just under four hours per night). This is through sickness (not wearing them, but getting oh-so-tight due to lack of movement/dehydration/etc.), health, seasonal changes, power outages, and a wedding.

I didn't get a picture every day. Some days I had to work early and Jason took some pictures (most were unusable b/c the angle was too strikingly different). Some days I forgot. Near the end, Elena would wake up early and be dressed for school before I had a chance to take a picture. These last two weeks Elena has been wearing her Dynasplint brace on one leg (nothing on the other) and alternating legs each night. With the Dynasplint, her wear time is longer, she can get out of bed by herself, and she has more freedom of movement b/c the brace can bend as she repositions herself in bed. She prefers the Dynasplint.

Here's my take on our trial.Edit: A little background, in case you're new to this blog: Elena has had three bouts of Botox, ages 2-3 (1st round lasted 6 months; 2nd round 3 months; third round, 2 weeks); SDR at age 4; PERCS (hamstrings) and traditional lengthening (calves) later age 4. She is currently 8 years old. She gets several different types of therapy every week and is an active child. There isn't a whole lot of interventions left for her. Elena has dynamic tone, which means it kicks in most when she is active. While E is "at rest", she has very decent range of motion. In the past E's team mentioned that she could benefit from prolonged stretching. Because she is so active, the best time to do so was at night. This was out of the question earlier in her life, as she had serious nighttime issues--for close to 3 years, she cried and screamed for an average of 3 hours per night. Once that was under control, everyone (including Elena) decided we could try a nighttime stretching regimen to see if there would be any benefit. E's orthopaedic doctor does not recommend nighttime bracing; he says the literature does not support that there is a prolonged benefit. My research backed him up; the net gain of nighttime stretching, a minimum of 2 hours per night for a minimum of two weeks only lasted a few weeks before returning to baseline contracture in Elena's diagnosis and age range (any growing SDCP kid, basically)--the research out there on this is pretty scarce (most kids won't tolerate it, and the sample population is already very low for a statistically sound experiment). I could NOT believe that night bracing could NOT HELP someone like Elena. I figured any increase of range in motion would be good for her, if she could tolerate the stretching regimen.

I do see a difference. I see a significant difference in her ability to stand taller and straighter than before the trial started. I believe this is an objective observation.

As far as the big question--does this ability to stand taller and straighter--a static, supported stand--impact how she generally moves--well, I think the answer is maybe, but not much.

I do think that when she thinks about standing upright and tall, she has better range. This has to be a conscious act for her. I do think she has improved her ease of movement, but that could be for many reasons--increased confidence, steady mobility gains, continued varied activities (biking, outdoors, soccer, catching, carrying, steps, better speed, etc.) and I would not attribute this to night bracing. I also think she is slightly easier to stretch at night (we do a series of stretches and exercises every night), provided she is cooperative (which she usually is).

She has also hardly slept through the night for 16 weeks. She would call for me nearly every night to come and remove the brace(s)--not fully awake, but obviously not the best sleeping arrangement. She did not seem to "get used" to wearing the braces for longer periods of time during this trial--meaning, there was not a steady increase in her hours tolerating the braces.

My opinion? Right now, I feel like this is a meager payoff for the effort we've made. I am perplexed that my supposition above--"--that night bracing could NOT HELP someone like Elena" after this trial is ambiguous.I am happy we've tried it. Elena tolerates her Dynasplint well now, which I think is a superior stretching brace that I hope to use with her for many years to come. She has also mentioned that she feels different (better/looser) after wearing her night braces. My guess is she would feel just fine if we had a nice warm massage/stretch in the morning, regardless of bracing during the night.

Now, I don't know what her movement would look like if she had been allowed to curl up at night for the past 16 weeks. But we're going to find out, b/c we're taking the summer off night bracing--unless Elena asks for it (which she might).

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Mission Statement

No one plans, or expects, to have a child with a disability. When this happened to us, we started a desperate search to find information relating to milestones or expectations for our daughter after her diagnosis. Most of this was fruitless. My hope is for this site to help any person or parent in a situation similar to ours.

About Me

I'm a work-hard, play-hard multitasking wife and mother of two. I'm lucky to have a supportive family and friends, and live in a great town for children with (and without) disabililties. Elena is my firstborn, born at 33w with moderate spastic diplegia. Vivian is my secondborn--almost at 28w, but with a lot of help, made it to 38 1/2w and developing normally; she was diagnosed with focal epilepsy at age 9.